A message from Lara 100 days after her blood stem cell donation

27 June 2016

"Not many people can say they have two birthdays. On March 10th 2016, I celebrated my ‘second birthday’ when I received a life-saving stem cell donation from a selfless stranger. Rewind three months and I was a 24 year-old student, doing research abroad when I received the most shocking and life changing news. I was told the leg pain and tiredness I was feeling was in fact an aggressive form of acute myeloid leukaemia (AML) and that a stem cell transplant would be the only chance of a cure. Unfortunately, my only brother wasn’t a genetic match and I would have to rely on an unrelated donor. However because of my mixed-race heritage, my chances of finding a suitable match were slim as on the worldwide donor registries only 3% are of mixed race origin. I chose to take hope in that 3%, however small.

"But I watched fear and desperation consume my family and friends, so worried that that there would not be a match for me. I was amazed when my loved ones mobilised and launched the Match4Lara campaign to encourage more people, especially of BAME and mixed race backgrounds to sign up to the donor registry. Our expectations were far exceeded when the campaign went viral and resulted in over 50,000 new sign ups worldwide. Many amongst these will go onto donate in the future, and give a leukaemia patients- like me - a second chance at life.

"My family felt overwhelming relief when a donor was found. I was elated but also knew how hard the next steps were going to be. It was daunting to read, in the patient handbooks, about the potential risks and side effects of a stem cell transplant. These handbooks are meant to give patients reassurance, but I just felt fear. What was hardest to accept is that my fertility has been damaged by the treatment and I won’t be able to have children. Knowing that I have been robbed of something that I had always looked forward to, was difficult to come to terms with.

"I had nine days of preparatory chemotherapy and total body irradiation before transplant day. I was really wiped out and couldn’t wait to finally have the stem cells. The transplant procedure itself was relatively simple and I received my donor’s stem cells through a drip just like when I had a blood transfusion or medicine, and the whole thing was over in half an hour! I know that the stem cells came from a lady living in Germany and they had been flown over only hours earlier. In her honour, and to make the cells feel welcomed, I listened to Beethoven and ate German chocolate during the infusion!

"It’s been a little over 100 days since I was hooked up to that drip. Over the past 100 days, many things have happened. I was very fortunate to not experience too many of the side effects that I had read about and before long the new cells had engrafted and I was discharged from hospital! I was so happy to be home, to sleep in my own bed and return to some semblance of normality but I know it will another 3 months till my immune system will be strong enough to allow me to go back to my old life of studying and part time work. In the meantime I have to remember to wash my hands religiously, avoid anyone with an infection and crowded public places, including public transport. I am adapting to a new normal. I am now a connoisseur of quiet cafes with outdoor seating. I’ve learnt to worship the sun whilst staying in the shade as the radiation has left me more susceptible to developing skin cancer. I’ve had to tell friends I can’t see them if they are unwell. My friends have always been there for me and ironically, at my 25th birthday party, those with colds protected me by not coming.

"Regularly practicing yoga has kept me physically strong and mentally centred. It hasn’t all been plain sailing since the transplant - I have had a few infections, one of which put me back in hospital. Back on the drip, I had to keep telling myself to be patient and to take things slowly.

"I am immensely grateful to all the doctors and nurses for the amazing care I have had and continue to receive, and of course to my donor who I hope to thank in person one day! I am also grateful to each and every person who was involved in Match4Lara. I think about the campaign each time I go for a check up and see the new faces at the Macmillan Cancer Centre: other young people who have recently received the life changing news that they have cancer. These new patients are why we must continue expanding the registry. In the UK, seven young people are diagnosed with cancer everyday. Worldwide there are 37,000 patients in need of a stem cell transplant. I feel so lucky that a donor was found for me and to have received a timely transplant. Every patient deserves a chance to have this life saving procedure; every patient with a blood disorder deserves a second birthday.

"I am proud to support DKMS and Anthony Nolan, who do incredible work for people with blood cancers. I look forward to celebrating future milestones and I am committed to continue to support these charities in the vital work that they do."